Monday, May 30, 2016

"My name is Jacob," begins the film Natural Disorder, which played last month at the Hot Docs international film festival in Toronto. "The first time people meet me they get an instinctive impulse to either run away from me...or to kill me."Jacob Nossell is a Danish stand-up comedian with cerebral palsy. "He could have been 'deselected' by scientists and his parents before he even was born," reads a press description of the documentary. "And realistically, he is now a burden on society..." In Natural Disorder, Jacob mounts an interactive play for the Royal Danish Theatre. Act 1 is called "Do I have the right to live?" He recounts the story of his adoption as an infant and how, a few months later, the adoption agency offered to "exchange" him when it was determined he had a disability.One of our clinicians recommends this documentary highly. Click on Natural Disorder to read more and view the trailer. Let us know if you've seen it and what you think.

“Offer hope training to clinicians” is one of three recommendations by the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal.

Parenting Matters, funded by the Canadian Institutes of Health Research, is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.

The recommendations for bringing hope into care are based on feedback from 87 parents, clinicians, managers, researchers and policy-makers at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.

Before drafting the strategies, participants heard about findings from a doctoral study on parent hope by researcher and social worker Sacha Bailey.

Sacha suggested that the idea that "parents who are hopeful are in denial" was a myth. "I showed that parents are quite grounded in the realm of what is possible with their hopes,” Sacha says. "Every family is unique. To assume that what one family hopes for is what all families hope for is not helpful. Hopes shift over time and are often about establishing a new normal."

Participants then broke into small groups where they developed ideas on how to integrate hope into their work.

BLOOM: Why is hope important in understanding parents raising kids with disabilities?

Sacha Bailey: My interest comes from my clinical experiences. Initially I worked with adults with intellectual and developmental disabilities in a community setting. Then when I went back to study to be a social worker, as a student I had lots of experience working with families of younger children with neuro-disabilities and I started to notice that despite their kids' challenges, these families displayed a lot of resilience.

BLOOM: As a parent, I know hope is an awkward topic that can cause tension between parents and clinicians. On the one hand, I've always said that if parents didn't have some hope, they couldn't carry out the gruelling therapy expected of them. On the other hand, as a parent who got stuck on hope for years and years and years, for something that wasn't in the cards for my son, I can only imagine how frustrating it might be for a clinician. I've often thought about what someone could have said to me so that I might have gone up the learning curve faster with my son, so that we weren't spending an inordinate amount of time focused on something he couldn't do.

Sacha Bailey: It is an awkward topic. One reason I chose to do my doctoral study was to understand from the perspective of parents what did it mean when a parent said 'I want more hope' or 'I'm looking for hope' or 'That doctor gave me hope.' Since presenting my findings to working groups, I've been given a lot of good feedback that helped me recognize the tensions around how clinicians understand hope and how families do. Clinicians often bring up the idea of not wanting to give false hope and being a little tentative about giving or encouraging hope.BLOOM: What are the main ideas about how clinicians can make their practice more hopeful?Sacha Bailey: To me, the biggest finding from this activity was creating opportunities for conversations about parent hopes. It's as simple as asking parents 'What do you hope for the future for your family and your child?' And also asking the child. It gets back to family-centred care. It's easy to get away from that when each professional has a different focus. We want them to think bigger picture.BLOOM: So do you mean maybe ask a question about 'what kind of life would you like your child to lead?' as opposed to 'how many steps can he take?'

Sacha Bailey: Even if the parent says 'I hope my child will walk' and in the clinician's mind it's not a realistic goal, that opens up a conversation: 'this is your hope, this is my perspective.' Parents tell me that having the conversation is more important than whether the goal is obtainable.BLOOM: As a parent I sometimes cut clinicians out who told me something wasn't possible for my son.

Sacha Bailey: For the parent who wants their child to walk, for example, and won't take no for an answer, I think the answer is to continue the conversation. 'What else do you hope for? If your child doesn't walk, how does that change your hope for the future? Are there other ways he can participate that don't involve walking but would still make the future bright?' Instead of getting stuck in the goals of a particular discipline, this opens up the conversation to think a little bit more broadly. Instead of pushing for a specific function, it's about how can the child participate in life activities.BLOOM: I know some parents say that their child's rehab goals don't necessarily translate into something that improves their daily life.

Sacha Bailey: It's a quality of life issue. Sometimes we come up with these goals without asking the child or the parent. Ultimately, is this going to help you? Is this going to increase your quality of life? Hope is a part of life. Does this child have hope for the future?

BLOOM: We know that parents of kids with disabilities are at greater risk of experiencing mental and physical health problems. Is it possible that hope mediates these problems?Sacha Bailey: Parents of kids with disabilities have higher levels of stress, depression, anxiety and health problems compared to other parents. When you look at the literature on hope, where they measure hope, it certainly does act as a resilience factor and seems to mitigate negative outcomes. Parents who report more hope also report less depression, anxiety, stress and better coping than those who report having less hope.

BLOOM: How would 'hope training' be offered to professionals?Sacha Bailey: The idea first came up when people talked about integrating it into curriculum of any program that has clinicians who will work in pediatric rehab. But it also has to be part of continuing education. As a clinician working within difficult systems, it can be frustrating and you can get discouraged, and clinicians need hope sometimes. Continuing education could be an interdisciplinary workshop or grand rounds. These are opportunities to bring clinicians together to talk about how we can help our families be more hopeful in our practice.

Sacha Bailey is research coordinator at the Centre for Research on Children and Families at McGill University in Montreal. She is also a doctoral student in the School of Social Work at McGill.

Tuesday, May 24, 2016

I’m 26 years old and I have severe spastic cerebral palsy. From as far back as I can remember I loved school and I loved to learn. I hated PA Days, weekends, holidays and summer vacations. If I had it my way, school would be 24 hours a day, seven days a week.

From a young age I dreamed of becoming a teacher. From Grades 1 to 12 I had an educational assistant who helped with my physical needs, such as taking notes for me and helping me go to the washroom. Going to school was my life: several EAs and teachers told me I was the only student they knew who loved the first day of school each September!

I was an A student in elementary and secondary school. My biggest goal was to go to college or university.

When I started high school, the resource teacher wanted to put me in applied level courses, thinking that academic courses would be too overwhelming for me.

After speaking to me and listening to my elementary school teachers and support staff, she reluctantly gave me an academic course-load and watched me soar!

I thought my life was going up hill. I was making friends, studying to make good grades, dreaming and looking forward to going on to post-secondary school. On May 11, 2004 my life changed dramatically.

What my family and I thought were seizures turned out to be a rare movement disorder called dystonia, with full-bodied spasms causing chronic pain and fatigue.

Dystonia is a rare, and in my case late-onset, disorder in which my muscles contract involuntarily, causing repetitive or twisting movements in my body. I have full body spasms constantly throughout the day and night, causing severe pain and fatigue.

In order to learn how to deal with my pain, I was an inpatient for six weeks at Holland Bloorview. After that, I went back to Grade 10 for half days, but I wasn’t treated well.My mum went in and showed them what to do when I have a spasm: to just hold my hands in an arm-wrestling position so that neither the EAs or I would get hurt. This made me feel safe and comfortable, but the school said it was liable and they couldn't do that.

The program support teacher told my EAs not to help me in a spasm. So I went through the discomfort of the spasm, and the discomfort of being alone and scared. The program support teacher also made me face a wall when doing my work.

Worst of all, she backed me into a corner one day and told me I was disgusting when I drink because I drink through a straw and make noises caused by my cerebral palsy. When she was called out on this comment, she denied saying it. To this day, I am self-conscious about the way I drink, even though I know I can't help it. They also kept me belted into my wheelchair all day, even though I was able to transfer myself and have a walker. Basically, I was a liability to them.

Later, the school brought brought in an occupational therapist to teach the EAs how to better deal with my spasms. Unfortunately, this was a nightmare.

The OT told the EAs to try to stretch my arms and hands out and apply pressure, but I often got hurt in the process. My neurologist sent a note letting them know I could easily snap a tendon, but they ignored it.

At one point I considered going to Durham College to take the academic upgrade course to earn my Grade 12 diploma there. I set up an appointment and my mother and I went in and spoke with an accessibility coach. As soon as we talked about my complex case and what accommodations I’d need, she told us that I was not a ‘fit’ for them.

If I wanted to go there, she said, I’d have to hire and pay for a personal support worker to come and attend classes with me. With a one-income family, that was way too expensive.

While I was still at high school, my principal suggested I finish my Grade 12 online through the Independent Learning Centre. I didn’t follow through at the time, but after I graduated from high school I took one of these online courses.

It was challenging because it wasn’t equipped to meet my needs. For example, I didn’t have a scanner, so I couldn’t scan my work into my computer and use my Kurzweil program to read the work to me. I need Kurzweil because I have trouble comprehending what I read. At the time, one of my EAs from high school helped me by scanning my books at my old high school, but it was hard.

In the summer of 2015, something made my parents and I talk about online post-secondary school—also referred to as ‘distance learning.‘ I looked into distance courses at Centennial College and found my dream course: Professional Writing.

I booked a meeting with a learning strategist at Centennial’s Centre for Students with Disabilities. My learning strategist set me up with an Individual Student Profile, which is a document listing the accommodations I require.

Last year, on Tuesday September 8, I started my first day of college as an online student.

My course work is electronic and Centennial gave me a reading program called Read and Write. This reads my lectures and webpages. I also have an assistive technologist at Centennial that I can e-mail or call for support.

I am now near the end of my second semester of Professional Writing. I’ve always wanted to be a writer and this was the perfect program for me to pursue. I didn’t know much about long-distance education before I began, especially for students with special needs, but I’ve learned a lot since.

For me, the main benefit of being an online student is: I pick when I study. If I’m having a bad day, I don’t have to worry about missing class.

I like the fact that I’m in a virtual classroom where I can interact with other students in my program. We're encouraged to comment on each others’ answers and are marked for participation.

Another benefit of distance learning is that I can deal with my health issues in the comfort of my home.

The challenging part of online learning is that if I need extra time to complete my course or an answer from my professor, I may have to wait 48 hours to hear back. That can sometimes slow me down when completing homework or assignments.

I asked Reed Hilton-Eddy, a learning strategist at the Centre for Students with Disabilities at Centennial College, who else might benefit from this kind of learning.

She recommends online education to students who have mobility issues, students who have chronic illnesses that may flare up at any time, and those who find being in public or large crowds stressful.

When I asked Reed if her office helps students transition from high school to college, she explained that they run a one-day workshop each year called PREP Smart. It explains the transition process and services offered to incoming students. They also provide a conference in the summer called SMART.

I am so glad that I finally found distance education. My hope and dream going forward is to write a book about my life with cerebral palsy. I want to be a voice for children and adults with special needs. We often talk about what people with disabilities can’t do. I want people to know what they can do.

Thursday, May 19, 2016

In 2013, McCauley Wanner and Ryan Palibroda did what stereotypically passionate artists are wont to do: they quit their jobs, sold their cars, and moved across the country to pursue a dream. But their story wasn’t a cliché. McCauley and Ryan were working on an unconventional art project—a series of bright, fashionable covers for prosthetic legs.

The undertaking had begun in 2010 as a university project. At the time, McCauley was completing her masters in industrial design at the University of Calgary. While she’d decided to turn her attention to medical design, she was determined to incorporate her long-held interest in fashion into her work.

A friend introduced her to John-Paul Austring, a fellow U of C student who had lost his leg to cancer at the age of 16. The two began talking about prosthetics, and the aesthetic options available to those who wore them. During her conversations with John-Paul and other amputees, McCauley quickly realized there weren’t many choices. “The more people I talked to the more I realized there was nothing,” she says. “It was shocking.”

She decided to take matters into her own hands, and dedicated her thesis to imagining what fashionable prosthetic covers might look like. After she finished school she joined with Ryan, who’d recently completed his masters of architecture. He worked on the practical, physical designs. Combining their skills, the pair soon began developing their own real-life models.

Today, the project has grown into Alleles, a Victoria, B.C.-based company that produces the bold prosthetic covers long envisioned by McCauley, now 30, and Ryan, 35. “An Allele is a biology term meaning a mutation of a gene responsible for causing variation like hair colour, eye colour, or smooth as opposed to wrinkly,” McCauley says. “Our company is all about providing variety to showcase variety.”

Their devices, which are made from plastic, attach to prostheses using a strapping mechanism. Since launching in October 2013, Alleles has produced around 1,000 of them.

Ready-to-wear covers are generally priced between $325 and $500 (custom models cost more—for example, some buyers have requested designs that feature tattoos they’ve lost along with their limbs). From the beginning, affordability was a key concern for McCauley and Ryan. They’d seen very few fashionable prosthetics online, and those that existed were typically elaborate art projects that cost thousands of dollars.

“We designed it be a retail product,” Ryan says. “We wanted people to actually be able to buy them.”

While the pair currently dedicates nearly 12 hours a day to working with and for amputees, prior to starting the project, McCauley and Ryan had very little experience with disability. In a way, this was an asset, they say. Being outside the industry meant they didn’t have preconceived notions about how prosthetics should be made, which allowed them to take more risks.

“It often seems like in medical design, people are concerned with getting their clients to function again in the setting of a hospital or clinic,” McCauley says. “But they don’t really think about that person living their life in the real world on a daily basis.”

“As outsiders we got to ask ourselves, ‘Why doesn’t this have any soul in it, why doesn’t this have any heart?’”

In order to make up for their lack of prior knowledge, the Alleles team made sure to consult closely with amputees, who talked about what they wanted and needed from their prosthetics.

One of those people was John-Paul. Since meeting McCauley during their university days, the now-29-year-old has stayed connected to the project and regularly gives feedback on their products. He has five covers of his own, and wears his current favourite 24/7, only removing it when it needs to be washed.

When he first lost his leg, John-Paul was given a bulky plastic cover, which created strange, unnatural-looking contours under long pants. He was embarrassed about how he looked, but felt hesitant to speak with his prosthetist, fearing he’d be seen as frivolous.

By contrast, he says, the Alleles covers feel like an empowering form of personal expression. “A prosthetic is a medical, utilitarian device,” he says. “It’s something that’s done to you. With these covers though, you’re turning the tables.”

John-Paul feels a sense of pride when he wears his covers, and a willingness to embrace his disability. “People don’t choose to lose limbs or get prosthetics,” he says. “But now you can choose to put something artful and beautiful on it. That becomes part of the healing process.”

Best of all, he says, the intricate designs have changed the way strangers interact with him. In the past, he says, people would stare at his missing limb, or ask him prying, personal questions about what happened to his leg. He felt singled out, objectified. And most days, he had no desire to rehash the painful experience of having cancer with people he barely knew.

With the covers though, the conversation shifted. Suddenly, people were complimenting him on the exciting designs. He could talk about his style, rather than his prosthetic. It was a much better icebreaker.

“Some days, I still struggle with the idea that my disability is a sign of weakness to others,” he explains. “This cover helps me get away from that. It shows I’m owning my disability.”

***

There’s a reciprocity between the Alleles designers and their customers. Just as people like John-Paul are influenced by the covers, individuals who wear Alleles products inspire McCauley and Ryan, who often name their designs after significant people or events. John-Paul has inspired two titles, with one cover bearing his first name, and another, his middle name, Steen.

In the future, McCauley and Ryan hope to expand their collaboration beyond individual customers. They’re hoping to partner with larger companies to become more visible in the mainstream fashion world. A brick and mortar store is also in the works. The couple plans to open up a boutique where customers can come to browse and get fitted. Ultimately, they’d like to include a line of clothing that would complement their covers as well. To them, this blending of fashion and disability is crucial.

“What people don’t understand sometimes is that everyone—regardless of ability—cares about how they look,” Ryan says. “Everyone has a way they want the world to see them.”

Wednesday, May 18, 2016

Perfect is a new children's book about the birth of a baby with a disability, told from the perspective of her older brother.

In a piece she wrote for The Scottish Book Trust, author Nicola Davies said she "wanted to write a story that gave a space for children's feelings, that allowed the 'unsayable' to be said." Nicola, whose mother is deaf, writes that one of our problems is our hesitation to talk about disability. "When a disabled child is born, there is a lot of fallout. Everybody has to adjust their expectations and there are, inevitably, powerful feelings involved: disappointment, grief, anger. All sorts of ugly things rear their heads. In time, as the new family member shows that they are a person, not a label, those negative feelings are erased and replaced by love. But pretending that the initial difficulties do not exist isn’t helpful, particularly for young children who may be confused by their own feelings."The book, suggested for children aged five and up, will be released Nov. 1 by Graffeg Books.

"This is a story about disability and how we see it, but it's also about any sort of difference, and how we make space for diversity in our society," Nicola says.

Monday, May 16, 2016

Staci Berman has been in pain for two years. It started at a
basketball tournament in April of 2014. As Staci, then 11 years old, ran up the
court with the ball, she was pushed from behind. All of her weight went to her
right leg, and she suddenly felt a jolt—a harsh, shooting pain that travelled
up her leg to her hip.

She and her family soon realized that the injury wasn’t a
typical one. In the weeks that followed, the Thornhill pre-teen’s pain only
worsened, and three months later, the discomfort had become unbearable.

Over the next year and a half, Staci and her mother, Shelley Berman, tried
everything: x-rays, an MRI, acupuncture, osteopathy, massage therapy. Each
expert seemed to have a different theory about what caused the pain. “Nothing
was really helping me at all,” Staci says. “And I kept getting worse.”

That first year, Staci missed 23 days of school. Once an
active student, she was forced to give up the extracurricular activities she
loved: hockey, volleyball, badminton, hip-hop dancing. Her friendships began to
suffer and she became depressed.

“Every time a treatment didn’t work I would become more
negative,” Staci says. “I cried a lot…I started to lose hope for recovery.”

There were some moments of hopefulness. Staci attended a pediatric
pain management group at the Hospital for Sick Children in Toronto. The program
helped her to feel less isolated by introducing her to others in her position. It
also taught her valuable coping skills. Still, her pain was relentless.

By July, 2015, the family was desperate. “We felt that
nothing in the system could help us,” Shelley says. “Staci didn’t want any more
appointments. She was refusing to see any more doctors.”

Shelley had heard about a children’s hospital in
Philadelphia with a highly reputable pediatric pain program. Defeated, stressed
and exhausted, she began preparing to send her child to the U.S. for treatment.
Then, she got a phone call from SickKids.

The doctors there told Shelley that Staci was eligible for a
new initiative at Holland Bloorview, the Get Up and Go Persistent Pain Program.
That same day, Staci and her mother travelled to SickKids to meet with Lori
Palozzi, a nurse practitioner who helped develop Get Up and Go.

Immediately, the pair knew it was something they wanted to
try. The program sounded holistic, Shelley says, and she was impressed by the clinicians' passion for their work.

“As Lori told me about the program, it gave me hope,” Staci
says. “I knew it wouldn't get rid of my pain entirely, but I felt like maybe I
could conquer it.” By November 2015, Staci was admitted as a patient.

***

The Get Up and Go Persistent Pain service was launched in
September 2015, and is the first inpatient pain rehabilitation program for
youth in Canada. The initiative, a partnership between SickKids and Holland
Bloorview, treats children between the ages of 12 and 18 who have chronic pain
or pain-related disabilities.

Patients are referred by their Ontario pain clinics, and are
typically children like Staci, whose discomfort interferes with sleep, relationships
and school attendance.

Get Up and Go, which is funded through the Ministry of
Health and Long-Term Care, lasts four weeks. During the first two, children
live at Holland Bloorview as inpatients. They then attend a day program for the
remaining half. Two kids are admitted in each session and, so far, 16 patients
have been treated.

Led by a staff of nine, Get Up and Go takes a
multidisciplinary approach to pain management—it draws on psychology,
psychiatry, social work, therapeutic recreation, occupational therapy and
physiotherapy.

This well roundedness, says nurse practitioner Lori, is part of what makes it
effective. “Chronic pain is a complex problem that requires a long-term
solution,” she says. “There’s no easy fix.”

At Get Up and Go, things are highly structured, and that’s
deliberate, Lori says.

Due to their pain, many youth miss school, give up the
activities they love and struggle to sleep. Over time this creates a vicious
cycle: little sleep and exercise wear the body down and intensify the pain,
which leads children to shut down further. “The less you think you are capable
of, the less you do,” says Get Up and Go physiotherapist Lisa Engle.

“We know that when a
child’s function is increased, their pain will eventually improve,” Lori says.

In hospital, the day begins at 7 a.m. when patients get up
for breakfast. Children go to Holland Bloorview’s onsite school, work out with
a physiotherapist in the gym or pool, go to counselling, and participate in
other kinds of recreation. Visiting hours are between 4 and 6 p.m. By 9, all
electronics are shut off to foster healthy sleep habits. An hour later, it’s
lights out.

In addition to building their endurance and strength through
physical therapy, youth learn techniques to cope with pain like deep breathing,
visualization and mindfulness meditation. They also learn how to pace and
organize their days to conserve energy, and to keep a sleep diary that promotes
a regular bedtime and wake-up.

Visiting hours are limited to 4 to 6 p.m. each day. This,
too, was done on purpose. Lori says that parents often inadvertently contribute
to habits that prolong their children’s pain—letting them stay home from
school, for example, or allowing them to dwell on their discomfort, rather than
reframing the discussion to help them manage.

“They may be excessively emotional in response to their child’s pain and
support the child’s tendency to avoid tasks and responsibilities at home,” Lori
says. “The biggest challenge for families in our program is to foster
independence in their child.”

Parents attend two group sessions a week where they discuss
the same topics their kids are learning about: sleep, coping techniques and what
they can do to help or hinder their child. For example, one thing they have to avoid
is jumping in to do everything for their child at home.

Parents also learn how their child’s pain can trigger their
own feelings—such as irritability, anger and anxiety—and how to take care of
themselves.

Parents receive individual counselling with a social worker,
something that Shelley says she found incredibly valuable. She says that often,
parents become so concerned with their children’s care, they forget that they
also have needs.

“The sessions were a time for my counsellor to answer any
questions that I had about how I felt personally,” she says. “That for me was
so important. Each time I left her office, I wanted to hug her.”

While the program is still in its infancy, Lori says that
patients and parents have provided mostly positive feedback during exit
surveys. In the future, she hopes the program will continue to expand. She’d
also like to increase the staff’s ability to track children’s progress through
their pain clinics after they’re discharged. (While Get Up and Go helps kids to
form a discharge plan, longer-term follow ups aren’t currently part of their
mandate.)

***

Five months after completing Get Up and Go, Staci says she still
feels the effects. As she progressed through her therapy, the pre-teen felt
herself get stronger while her abilities improved—and that hasn’t gone away.
Today, she’s back to playing volleyball and basketball, as well as running
cross-country. She still feels pain, but while it used to be constant, these
days her discomfort normally only spikes during intense physical activity.
Slowly but surely, it’s lessening.

Staci was so inspired by the bright, airy hallways of
Holland Bloorview, and by the treatment she received there, that she plans to
return to volunteer once she’s old enough.

In the meantime, she advises other kids like her not to give
up. “Stay strong,” she says. “Pain ends.”

In 2012, a young man with a spinal-cord injury and his three best friends travelled across the U.S. to meet with disabled people participating in any kind of adapted sport.Endless Abilities is the resulting documentary and it airs tonight at Holland Bloorview at 6 p.m. as part of the ReelAbilities Film Festival.Free tickets can be reserved in person at TIFF Bell Lightbox (350 King St. W) daily from 10 a.m., over the phone at 416-599-8433 and online.If you have any trouble accessing tickets, please e-mail lhanson@hollandbloorview.ca with the number of tickets you need, and whether you need wheelchair seating.

Thursday, May 12, 2016

Carolynn Gludish has worked as an inpatient nurse at Holland Bloorview for nine years, primarily with children who are in rehab following catastrophic trauma or painful bone surgeries. She now coordinates our day program. When BLOOM asked for clinicians who would share a candid look at their work in children's rehab, Carolynn stepped up.BLOOM: Why did you go into nursing?

Carolynn Gludish: I’ve always enjoyed the mystery of the human body and its ability to heal itself. When I was 10 I had a friend who had leukemia and I went to visit her often at SickKids and I liked that the nurses helped her feel better, physically and emotionally. I realized that was the field where I could do that.

BLOOM: Some of the children you work with were healthy until they had a traumatic injury that completely altered their life.

Carolynn Gludish: Yes, for example, one day they were fine and the next they’re not able to move from the neck down. As a nurse, I try to balance the medical piece with the life piece. You have to realize that kids had lives outside this place, and all of a sudden they’re cut off from that life. They’re very aware of what’s still going on outside and that they’re no longer a part of it.

They’re going to have sad days and incredibly depressed days and incredibly hopeful days. And then those days when they realize they will never be the same. A large part of nursing is looking at the person as a whole and trying to figure out where they are today, where their head is at.

If the child is having a day where they’re focused on strengths and the things they want and the hopes they have for their rehab journey, you may push them to work a little bit harder. You may creatively incorporate therapy into the everyday things they do when they’re not in therapy.

If they’re having a down day or a day where it seems hopeless, you’re not going to push them as hard. Doing so will just make them feel less able than they already feel.

BLOOM: What do you do on those days?

Carolynn Gludish: You spend more time listening. You have to acknowledge where they are: the sadness, the depression, the loss. It’s a grief process. You don’t want them to feel that you’re not hearing where they are. Then you try to steer them to where they can maybe find one positive nugget. It could be something about the day or the week. Sometimes ‘life’ is just too big to look at in the moment. And sometimes that’s a great accomplishment for a day.

BLOOM: I assume there are unique issues for families whose child was healthy and then acquired disability through trauma.

Carolynn Gludish: It’s a very steep learning curve for families in that situation. Everything is new and it has to be sorted out quickly. If someone needs their home to be accessible, that process has to be started now, while the parents are still in the stages of dealing with the grief and loss of what was.

BLOOM: How do you support a family when their child's life has been upturned?

Carolynn Gludish: I’m cognizant of the fact that aside from employees who work here, most people don’t want to have to be here. They may be grateful that they’re here, but it’s not their preferred place of choice. I’m also aware that families are balancing what’s going on here with a whole life outside, so there’s a lot on the table that I probably have no idea about.

Sometimes the best support you can give is to listen. And to follow through on what you say you’re going to do—even if it’s as simple as ‘I don’t know the answer, but I’ll get back to you.’

Communication is huge in helping families feel like they’re not in the dark or left out. It's important to figure out what kind of communication works best for each family. Knowing they are overwhelmed, does it help for me to write things down, or do they need to sit and listen? Do they need me to take a photograph of a piece of equipment and then draw arrows and instructions on it to explain how to do something? Or would they like to do a run-through with the equipment with me there?

BLOOM: If you could tell parents one thing, what would it be?

Carolynn Gludish: It’s very individual. It would be individual to each child and family. I come to work every day thinking about what it is that I can do to help facilitate each child’s rehabilitation journey. What can I do to help or further it?

Although as nurses we all have different personalities and styles, really what we want is for the child and family to have the greatest gains when they’re here so that when they go home we know we’ve done our best to set them up for the next steps, whatever they may be.

BLOOM: What advice would you give a nurse just beginning in children’s rehab?

Carolynn Gludish: I would say your technique is like riding a bike. Once you’ve learned how to start an IV or draw blood, you can do that across populations.

The really important piece is understanding the psychosocial aspect of nursing in a rehab hospital. How do you mix that rehab into the child’s activities of daily living and keep it fun? I think humour is huge. You have to be able to laugh together, to enjoy the moment together, so you’re not ‘tasking’ someone to do something, but you’re having a little bit of fun with it.

We do a lot of therapeutic play. Let’s say I have someone who needs to work on fine motor skills. So I get a Wii remote that will be hard for them to hold and use the buttons. 'Let’s play Mario Kart and try, and see how it goes?' I’ll ask. Or we’ll do a puzzle or pick up monkeys out of the barrel.

If they’re working on balance, let’s get out the soccer ball and make sure you have all your gear on and play a little soccer in front of the nursing station. But we’ll play a game where we only kick with one foot.

As a nurse, you can’t be afraid to crack yourself open and let that inner kid out. That’s how you’ll connect and that’s how you’ll get the most enjoyment out of being here on a daily basis. If you can learn to play again, it feels good and you'll tap into a piece of yourself you forgot was there.

You have to be creative, compassionate, thoughtful and patient.

You have to be reflective.

BLOOM: What do you mean?Carolynn Gludish: You have to sit back and look at yourself at the end of the day and think about what you did, how you did it and if there’s a different or better way to do it. It won’t apply across the board, because every family is different.

I often pop in to ask parents if there’s a different way I could have done something that would make it easier or better for them: ‘How can I make your experience and your child’s experience better?’ It’s the same when I’m teaching students. I ask: ‘Am I facilitating this in a way that works for you and if not, how can I do that?’

BLOOM: Do parents give you constructive feedback?

Carolynn Gludish: Yes. And they mean it constructively. I don’t want to practise nursing in a way that may feel good for me, but not for the parent. It’s very diverse, very personal.

BLOOM: Is there something common parents ask for?

Carolynn Gludish: No. I used to think I would get a consistent answer, but I don’t.

BLOOM: That’s interesting, because I find what can be really supportive and empowering for one parent might not be for another. Two parents could interpret the same thing in different ways. I’m thinking of our family-centred care behaviours, and how we talk about how it’s not respectful to refer to a parent as 'mom.' However, for me personally as a parent, I used to love being referred to as 'mom.' I thought that was the highest compliment. It must be challenging when there isn’t one ‘right’ way to do family-centred care.

Carolynn Gludish: You know how we have that diagram of family-centred care with a circle in the middle and offshoots? Well, I find it’s more like splatter paint than a nice paint-by-number diagram. So this little sunflower works really well for this family, but it hits this family the wrong way.

It’s not prescriptive.

You have people with children who were born with disabilities and people who come in because their child was in a traumatic accident. Just because they can both benefit from family-centred care doesn’t mean that one version of care will apply to both camps. It really won’t.

BLOOM: I like that image of splatter paint. It depicts something much messier and unique to each family.How do you manage the emotional side of your work? When we ran the narrative group for inpatient nurses, many said they felt like they were the only ones who experienced emotions like regret, grief and guilt. They were surprised to learn that everyone, no matter how much experience they had, had the same feelings.Carolynn Gludish: On the unit I have a good group of friends and we do talk about this stuff. And we cry about it sometimes. And there are times I’ve cried about it with families because I couldn’t help it. In those moments, I’m always surprised by how much parents appreciate the humanness and the rawness. Sometimes it’s that we're frustrated that we can’t do more. And sometimes when a family talks about what they’re going through, it’s grief for us as well.

I’m a physical person. I need an outlet, so I will ask the parent if they’d like a hug. I play hockey and I swim, and I find that helps. Some people write, some people meditate and some watch TV and zone out. I need to do something. While I’m playing hockey I’m thinking about what it is on my mind and I often come to funny conclusions about why I feel the way I do.

Sometimes I can do something about it and sometimes I can’t, I just have to accept that things are what they are.

BLOOM: What is most rewarding about your work here?Carolynn Gludish: The kids. For sure. The most rewarding part is watching them as they strive toward and attain the goals that they set for themselves. It doesn’t matter how big or small, the pride that comes with that little milestone for someone who set it themselves is really cool to watch.BLOOM: If there was one thing you could change about your job, what would it be?

Carolynn Gludish: I’m here because I love being here. Sometimes I feel the business side of things trumps the kids' rehab side of things and I struggle with that. Sometimes, if I could, I would say 'You need to put the dollar sign aside and look at what's happening here, because this is progress, and we'll figure the dollars out later.' That would be the one thing I would change. My hat is off to Julia as she comes down to the unit and she wants to know what's going on, how things work, what feels good for the clients and what nursing needs in terms of supports. I hope it continues.

Tuesday, May 10, 2016

When my sister Christy was
born, I had a lot of plans and dreams that grew to fill the empty spaces in
my life. I think this happens when little-girl wishes come true. Most of my
aspirations were pretty typical. She would be my best friend, my late-night
confidante, the student in my classroom, and the mannequin in my hair-salon. My
partner in crime. My taste-tester. My maid of honour.

Fast-forward 10 years, and my sister had been diagnosed with autism
and a significant intellectual disability, among other things. Given her exceptionalities, I had to let go of many of these
dreams.

I gave up trying to make
her sit through my hair experiments and classroom lessons. Sometimes I would
talk to her late at night, but it's hard to talk to someone who can't respond.
She was pretty selective with her food (for a few years, her meals consisted of bananas and strawberry yogurt), and she didn't know how to keep
secrets. Despite all of these things, there is one dream I never gave up on: my
sister would be my maid of honour.

So, when Ryan proposed to
me, my “proposing” to Christy was the first thing I checked off my list. I didn't think twice about it. I had known my whole life that my
sister would be the one to stand next to me on the best day of my life, and, as
someone who is usually packed full of worries, I can honestly say there wasn't a doubt in my mind that it was the right (and best) decision. This was all
confirmed when Christy began to introduce herself to every person she met as “Kayla's
maid of honour” and refer to her navy-blue dress (that was identical to the other
bridesmaid dresses) as the “special maid of honour dress.”

Then the questions started
coming. The questions I never could have imagined.

“So... who's going to, you
know, do the actual maid of honour stuff?”

Since Christy has a hard time with planning, it made sense that this was a concern for some people.

“My mom is the queen of
organization,” I told them. “My other bridesmaids will support my sister, and
naturally, I will be super-involved with every detail.”

“Well, that's good... but
will she be able to make it through the day? Like, what if she can't?”

“Okay, so maybe she won't,
or maybe she will.”

To be honest, this didn't matter to me. I wanted my sister there with me. Whether she cried,
laughed, sat, stood, took two pictures with me or 20, it wasn't important. I
wanted to experience the day with her there, and I knew that's all she wanted
too.

“Okay, but seriously, who
is going to be your actual maid of honour?”

This is where things
started to head south for me, and I was afraid
steam might come out my ears.

Fact Number One: I am
extremely protective of my sister. I'm usually a very gentle and quiet person.
That's just me. But I do remember times in elementary school when I would storm
over (as intimidating as a 70-pound Grade 6 kid could be) to anyone who might be
bothering Christy and give them a piece of my big-sister mind. Christy is
beautiful, hilarious, kind, and a lover of all things neon. She is perfect to
me, and anyone who saw otherwise was not welcome around her (or so my 12-year-old
self thought).

Needless to say, when
people suggested that Christy might not be “good enough” as my maid of honour, it
didn't sit well with me.

Despite my confidence in my decision and happy hopes, making Christy my right-hand girl caused a
lot of conflict in the nine months leading up to my wedding. My mom and I tried
hard to remain organized and lightly delegate the support Christy might need,
but a lot of people were really unsure about her capabilities and the role that
she should have.

It came to a climax on the
day I overheard a conversation that wasn't meant for my ears: “All the
stress and problems Kayla is having are because she doesn't have a real maid of
honour.”

I cried for almost an
entire afternoon. What did they mean she wasn't real?! And
how was she in any way responsible for my wedding stress? All wedding plans
become stressful at one point or another, and if anyone was responsible for the
stress it was me. After all, it was my choice to involve her, right?

I learned
a lot of valuable lessons that day. I learned that
the ability to forgive is a matter of the heart, and that it’s often hardest to
forgive a person for hurting someone close to you. I
learned that not everyone will understand my sister like I do, and that is
something I am going to have to be okay with. I was also reminded of something
that I so often forget: my sister is my personal cheerleader.

That day when my heart broke for the hurtful words directed at Christy, she was the
one beside me offering comfort. She gave me multiple hugs, put her arm around
me, and confidently told me that I was going to be beautiful on my wedding day. Isn't
that what all us girls want to hear in our lowest moments? She also assured me
(not for the first time, or last) that she was very excited “to have a
brother in the family.” I'd say that's exactly what a bride needs to hear from her maid
of honour.

Christy knows me better
than almost anyone. Despite her struggles in many areas, she is one of the most
intuitive and empathetic people I know, and I am crazy-blessed that I get to
walk with her through the adventure of life.

I'm extra grateful that she stood
by my side through my entire wedding day. She held my flowers, she saved my
twin flower girl and ring bearer, aged 3, when they got lost walking down
the aisle, she danced her heart out all night long, and she wrote the most beautiful
speech. If I had to do it all over again, I would choose her in a heartbeat.

Christy is my lifelong biggest
fan, and she is the best one I could ever ask for.

Monday, May 9, 2016

The headline Giving A Name, And Dignity, To A Disability is at odds with the lead, which stands as the first paragraph:

“IDIOT. Imbecile. Cretin. Feebleminded. Moron. Retarded.”

The piece is about the language used to describe people with intellectual disability, suggesting that each of these names was at one time considered benign: “Offensive now, but once quite acceptable,” columnist Dan Barry writes.

Really?

According to whom?

I’m quite sure the folks with intellectual disability weren’t asked at the time.

Would a similar analysis piece about another marginalized group—women, transgender people, aboriginals or other racialized communities—kick off with an unadorned list of slurs?

No. I don't think it would. I think that kind of opening would raise a red flag for writer and editor alike.

Barry writes that the name we assign to a marginalized group “speaks to a continuing sense of otherness; to perceptions of what is normal, and what is not.”

In setting this article up with such dehumanizing words, he feeds in to rigid, visceral stereotypes.He traces the history of the medical term: that "idiots" must have been caused by human sin; that the "feebleminded" were immoral and "a threat to American stock." No matter what word was used, it became pejorative, he writes, as a way of positioning people with intellectual disability as less than human, "other."

Finally, after comments from historical and medical experts, he notes that disabled people themselves have fought back against the r-word in recent decades.And there’s a lovely anecdote about a real person's life tucked away at the very bottom.

Barry writes about his investigation into an Iowa turkey plant that kept dozens of men with intellectual disability in servitude for decades—forcing them to rise at 3 a.m. to gut turkeys for $65 a month. The 2014 piece—which Barry has since turned into a book—is filled with the humanity of the men. That's why the framing of this new piece gave me such a jolt. It didn't sound like Barry.

At the end of the new article, Barry tells the story of one of the men he reported on since he was freed.

“Today he is the sole resident of an apartment in Arkansas,” he writes. “He is a commuter, a palette-jack operator, a pet owner, a Dr Pepper drinker, a brother, an uncle. He is many things, he says, ‘but I am not retarded.’”

Why is this first-person vignette, which gives us more than a one-dimensional view of intellectual disability, buried at the end? Did an editor flip it that way?

That anecdote could have opened readers' minds to a more flexible way of thinking about human value. Instead, readers who only skim the first few paragraphs of the article won't even see it.

Don't forget that only a few years ago it was editorial practice at The New York Times to describe people with intellectual disability as “retarded.” In fact, in 2013, Phil Corbett, then associate managing editor of Standards, in a back and forth correspondence with me, wrote: “While ‘imbecile,’ ‘moron’ and ‘idiot’ were all used in the past to refer to people with intellectual disabilities, I don’t think most modern readers or speakers of English make any such connection today.”Really?

Wednesday, May 4, 2016

Checkout the latest in our A Family Like Mine series! Don't forget you can click CC in the lower right for closed captioning.

Meet Holland Bloorview family leader Donna Cappelli, who
is mom to Julian, 15, a soccer enthusiast who has cerebral palsy, and his brother Dante, 17, and
married to Gerardo.

Julian’s greatest
challenge is uncontrolled movement, Donna says. “If he tries to do something,
his body does the opposite. It’s like him doing a marathon every single day.”

Donna’s advice for other
parents? “Try to live your life normally. Try not to get caught up in a lot of
the things that you feel you need to do for your child...The best thing for us
is when we go and do something for Julian and not worry about a day about having to
do homework. And not have to do therapy and not have to stretch him out…”

Julian’s advice? “It’s
okay to be different. Try what you like and it will distract you from your
loneliness.”Don't forget you can click on the closed captioning (CC icon) in the lower right corner of the screen to ensure you can understand the speakers.

Monday, May 2, 2016

It’s a question I used to ask when I was young and meeting someone new at a party. It was a way of learning about a person, but, if I’m honest, it was also a way of measuring them. What were their interests? How educated were they? What kind of job did they have?

I can’t remember the last time I’ve used that line. I imagine it dropped out of my vocabulary over the last two decades, since my son with disabilities was born.

I sometimes ask people now, “What do you enjoy doing?” but that is a whole different question.

I am sick of our culture’s obsession with what people can “do” as individuals and how it’s used as the measure of human worth.

It’s this logic that’s devalued people with disabilities, who may not be able to do the same things as those without, or who may do them in an unconventional way or with the assistance of a guide dog, technology or other person.

If we are to value human diversity, then surely we need to let go of a concept of human worth based solely on individual ability and performance.

Aren’t we more, as people, than what we do?

I believe we are, and this is why I’m disheartened when someone attempts to convey the value of a disabled life (yes, I’m using that phrase because of the SayTheWord: Disabled campaign) by trotting out all of the things a person can do.

In the Pacific Standard piece, she talks about how medical specialists and others paint a negative view of what people with Down syndrome or more severe disabilities can do as children and adults.

She says it’s this reasoning that feeds in to the practise of parents who stop the growth of their children with severe disabilities through surgery and hormone treatment. Because it’s assumed these children have low intelligence and little capacity to do anything in the future, why not make them child-sized for life, and easier to carry and take care of?

She then contrasts this with examples of what people with severe disabilities and her son have, in fact, been able to do.

For example, she talks about Ruth Sienckiewcz-Mercer, a child diagnosed as an “imbecile” by doctors after brain inflammation, who later was discovered to be able to communicate in a rich and sophisticated way through the use of her eyes.

She notes that author Michael Berube's son Jamie, who has Down syndrome, accomplished most of these things that utilitarian philosopher Peter Singer deemed impossible for a person with an extra chromosome by the age of 14: “We cannot expect a child
with Down syndrome to play the guitar, to develop an appreciation of science
fiction, to learn a foreign language, to chat with us about the latest Woody
Allen movie, or to be a respectable athlete, basketballer or tennis player.”

We learn that her son Henry, at age eight, “can read and write; recite whole episodes of The Muppet Show by heart; swim across the pool; and just started his first season of Little League.”

I think this is fabulous.

But what does it have to do with her son’s worth as a human being? Would he be less valuable if he couldn’t read and write at age eight, or swim the width of a pool? Do we need to “do” things to justify or enjoy our existence?

I agree with Rachel that it’s wrong for health professionals to “deny the possibility of an open future” for children with disabilities. All children and families deserve to dream about living a great life.

But why tie a great life to conventional success? Is that useful, or healthy, for anyone—disabled or not?

What about dreaming of a world in which your child feels worthy and that he or she belongs? What about a world in which your child feels “good enough” just as they are, and not contingent on their next big “win” or mark?

At the end of her article, Rachel talks about how she used to seek out adults with Down syndrome to help her imagine what her son might become in the future. But then a therapist set her straight: “Henry’s future is going to be completely different,” the therapist said. “With all the therapy he’s getting, and the educational opportunities available today, who knows what he’ll be able to do?”

Again, with the emphasis on doing as in “I do, therefore I have value.”

This therapist actually denigrates the value of adults with Down syndrome by telling Rachel that her son will “do” so much better.

Which brings me back to what a tragedy it is that we can’t move past conventional notions that link human worth and ability.

Isn’t value a birthright? Does it really have to be earned through what you do? Is our worth always fragile and teetering, given that at any moment we could lose our abilities due to illness or accident?

Do we really want to make respect and dignity conditional on how a person performs? In other words, if you're not able to do x, y, z, then I have no respect for you?

Why is it that we can’t assign value to each person, simply because they’re human?

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.